In search of personal care: Challenges to identity support in residential care for elders with cognitive illness

In addition to meeting medical and bodily needs, personal(ized) care aims to address the biographical and social identity of the recipient. The term personal care contrasts most starkly with impersonal care, which connotes bureaucratic and instrumental treatment. Care work always requires some adaptation to individual preferences and responses. However, typically, this is either an implicit or a secondary feature of care. With cognitive illnesses, such as Alzheimer's disease, however, the very capacity for maintaining a self (via language and memory) is threatened; thus, the extent to which care addresses the person qua person becomes especially significant: for the afflicted, personal care is identity care. This article is based on paid work and field research in a residential care setting; proponents claim that these quasi-institutional settings are conducive to the provision of personal care, and to collaboration between formal (paid) and informal (family) caregivers. Our research suggests that these goals are elusive, even in settings ostensibly organized to advance them. This partly reflects the ambiguous, contextual meanings of personal care. Despite its commonsense meaning, there is no simple or consensual definition of personal care. We develop a conceptual and empirically grounded typology and discuss the practical implications of various definitions for the fulfillment of the ideal. Barriers to personal-as-identity care are not confined to large, custodial institutions. Among those we find in residential care are instrumental definitions of care, which govern both the practice and public regulation of paid care; a functionally diffuse (familial) division of labor, which intensifies care work; and emotional demands of the care, which undercut family members' role in helping to translate individual meanings and practices of personal care. Even when all concerned are committed to supportive of personal-as-identity care, there is ambiguity regarding whether to treat identity as object(ive) or as a process. (C) 2004 Elsevier Inc. All rights reserved.